Thursday, January 29, 2015

Ever since Oren started blogging he has asked me to write a guest post. I would be venting or kvelling about one thing or another and he always, under his breath, encouraged me to post about it. I, on the other hand, had tons of excuses. I’m not the best writer, his readers would actually hate me if they knew me, I have too much other stuff to do, I do enough writing for work. It just isn’t my thing, and that’s ok. But today I am ready. I’m ready to write because I have something important to say.

On August 28, 1997 I walked into the Dublin Castle, a pub in Camden Town, London, ordered a half pint, and sat at what I thought was an empty booth. It was probably the first time I had ever ordered a beer from a bartender or been to a bar by myself. As I took my seat, I realized that I was not alone. There were two guys huddled in the corner of the booth, talking. I quickly stood up, they encouraged me to stay and we all began to talk. They were musicians who were dropping off a demo tape to see if they could get a gig there. They didn’t know much about the bands playing that night but they invited me to go down the street to see their friend’s band. Feeling pretty impressed with my new found sense of independence, I agreed and we bounded down the road to the Laurel Tree. It’s at this point in our story where the facts are slightly blurred. There is Oren’s story and my story, but the short story is, the next day I told my Aunt Marlene that I had met my future husband, that I was in love and that I would be back in London. And I was right, about everything.

On that balmy, August, London night, I met the man some people only dream about. From the moment we met, I felt completely and utterly fulfilled. Every cliche is fitting. Four years later we were married, six years later Liam was born, two years later Madeline was born, and in March of last year we moved in to our dream home. The first few weeks in the house, every night, I would look at Oren and we would just marvel at how far we had come and how lucky we were.

It was two months after we moved in when Oren was diagnosed with stage 4 lung cancer. (Holy shit, I know I have written those words before but every time it is a punch in the gut.) The early days of Oren’s diagnosis are a blur, and the last several months have been hectic and a total roller-coaster. But there are some things that I have learned over the last several months that I want to share. First, kids are incredible and resilient and we don’t give them nearly enough credit. Second, when something like this happens in your life, your friends will be there. Don’t worry, they will be. This whole thing has refreshed my faith in humanity. The goodness in people is like a life raft in the abyss of the ocean. I may not always return your messages but your words are keeping me going.

But there is one more final lesson that I have learned and keep learning. Oren Miller is the most incredible human being I have ever known. In our march through the grueling and cruel battlefield of cancer, it is Oren who is our North Star, our light in the distance. His determination, focus, sacrifice, tolerance and grace are that of an Olympian or a superhero. He is fighting. He will keep fighting. It inspires awe and has deepened my love for him at a time where I thought it was as deep as could be. I cannot imagine my life without him. He has sacrificed a lot to make our family work and it is totally worth it.

And this brings me to the ever so important thing that inspired me to write this post. I asked you all (BloggerFather fans) to join me today and raise your glasses (hopefully filled with his favorite white wine--you know, the good, kinda sour-tasting one) to wish the love of my life the happiest of birthdays.

Monday, December 22, 2014

And there you have it, the new normal of chemo. The first day after the first treatment, I was awake for about an hour throughout the day. It's not my favorite way of spending a day, and it has nothing to do with "quality of life," which is at least half the focus of my treatment, but as long as things get smaller, I'll keep getting chemo, and I'll get to say, "I fight!" although sleeping all day doesn't necessarily feel like fighting.

I've started writing birthday letters to the kids. Just a few paragraphs that would hopefully remind them of me and of my eternal, unconditional love. Remind them I'm there even if I'm not physically there. I want them to know they can turn to me at any age--not for advice, but for comfort. Not to help them create their paths, but to remind them their paths are up to them, and that I'll be proud no matter what.

I've written a few already. Today was a longer than usual letter to a 10-year-old boy. Between Facebook and the blog, I know he'll be able to construct a picture of me, even if he doesn't quite remember what I had meant to him. The girl, well, in a day or two I'll sit down to write her 8th birthday letter. She won't remember me by then--only the way we remember long-gone relatives. Remnants of unexplained emotions and random, barely remembered anecdotes. But really, what else can I ask for? Do I need her to know the realme? Do I know the real me?

Here's me, or at least one side of me: I grew up in Israel. There were wars, and my dad went to the wars. My sister and I took his army shoes off when he came back home. I remember their smell. When I was 16, I became a political lefty. I couldn't stand the moral degradation my people so easily succumbed to for empty promises of security by charlatans who knew better. I became an Atheist, mostly because the alternative stopped making sense. Religious people can say my views make no sense. That's OK, they can say that. I served in Golani, although it's unclear whom exactly I served. That's where I lost my faith in authority and in my country. That's where I realized no one cared, and that we were all operating out of self-interest, and the hell with the rest.

Then I left for London, where I met my wife, and after an hour of chatting with her, my world-view changed again. Here she was, the selfless one who cared. And if it were possible for her to give so much of herself to others (in fact, it came so naturally to her), then the world must have been filled with so many people who wanted to help others. She made the world a better place for me, and if you find a person that does that, you don't let go.

We moved to the US. We had two amazing Pit Bulls. Seven years later, we started making babies. The transition from Man to Dad has been the most profound experience of my life. By the way, I think life is amazing.

After a couple of good weeks, I'm back to sleeping all day. Still, this second round of chemo has been much better than the first, and at least now I kind of know what to expect. A sleep that comes and goes, an appetite that comes and goes, and strength--physical and mental--that comes and goes. And I'll take this new normal as far as it gets me, hoping for years, but knowing it's not up to me.

A couple of days ago, we asked the doctor what she thought about me going to my kids' schools. It's been very difficult for me to be so ignorant of their lives outside the house. The doctor said, "Go, but wear a mask." And I said no, I'll go without a mask, because sure, my kids don't need me with pneumonia in the hospital again, but they also don't need me wearing a mask in front of their friends. Let them determine for themselves how they want to deal with a sick dad--they don't need me and some stupid pink mask to set the tone for the rest of their school lives, their friends raising endless questions they may not be comfortable even thinking about.

So I went today to a Terrific Kids award ceremony at the school. I got to see my brave son read a short speech, and finally today, in December, I got to see his teacher. Next stop: my daughter's Hanukkah show in two weeks at the JCC preschool. I see the jokes and the memes on Facebook. I know these shows are a pain for some of you, but they're my reason for living.

Spent a day at the hospital again. I had trouble breathing, so I was told to come over for some IV fluids and tests. I'm sitting there in the chemo room and I look at the other people. Some of them may have had an easy life, and others may have had to struggle uphill their whole lives, but no matter what--nothing prepares you for this. I mean, mentally, sure, I was ready. I was ready to fight and I was ready to accept the possibility of defeat with dignity. Physically, though, nothing prepares you.

Nothing prepares you for the weight loss, for the hair loss, for the loss of appetite... Nothing prepares you for the identity crisis you feel when you look in the mirror. Nothing prepares you for the loss of self. You say you'll fight, you'll be a cancer warrior, but nothing prepares you for the inability to fight.

And now I'm at the good week of chemo again. I'm awake all day, I go downstairs to eat, and I've even gained some weight. It's easy to be optimistic on the good week--easy to accept this as the new normal. Easy to call myself a fighter. It's even easier to look in the mirror. Easier to think about the near future.

See, we have plans: London in the spring for a family wedding. We plan to go to The Dublin Castle pub, where we met, and take pictures with the kids. It was here, Kids, that your mother transformed a cynical misanthrope who hated everything and everyone in the name of misguided Individualism into a man who believed in humanity again. It was here, at this table, that your parents met and started to talk. This table, Kids, is where your own story begins.

Tuesday, November 4, 2014

Although I had written two blog posts about embracing mortality, there was always a plan: The Tarceva--the chemo pill I've been taking since June--would work for, let's say, 5 years, before my misguided body starts fighting back. By then, there would be another treatment--maybe a clinical trial or an experimental surgery, and then, the promised land: NED. No Evidence of Disease. Followed by a big party with a big cake, big balloons, and big plans for the future.

After only a few months, though, it looks like the pill doesn't work anymore. A scan showed growth in the liver. So now what? The alternative to Tarceva is either another pill, which may or may not work for a limited time, or chemotherapy, which is limited in what it does.

And the irony is that I don't feel too bad. Walking--even standing--as much as I do now, would have been unimaginable only a couple of months ago. And now: Things are great! I'm breathing better, and I have more energy, and I go downtown with the kids, and I drive them around, and for a second, it looks like this is something I can beat, and then the doctor tells me the freakin' pill doesn't work.

Since I feel relatively well now, I tend to forget I'm on a one way road here. Sure, I'm allowed to deviate here and there, go up on this or that mountain to allow myself to be the man I was 5 months ago. I'm allowed to be active on the mountain. I'm allowed to stop obsessing about my health and about my future. I'm allowed to be a good dad and an average husband again. I'm allowed to taste life beyond cancer.

But the gift of life beyond cancer--one I wish I hadn't taken for granted all these years--is temporary. At some point, cancer wakes you up and calls you down. Time to get back on the road.

But first, here are some pictures of life on the mountain, inevitably followed by the shock of coming down:

Had an amazing, memorable, rejuvenating trip. Three days in New York, five days in the Berkshires, then 6 hours to drive back home. In the evening, I start to sweat. I have nausea. High pulse. Runny nose. All happening at the same instant. And then...

Then suddenly that smell again. Oh no, not that smell again. Imagine opening the door of an antique, wooden armoire. Imagine moth balls. Imagine getting into the armoire and closing the door behind you. That's the smell. That's what I get as soon as I start feeling sick, like I'm inside a mothball-filled armoire.

This time I'm in my own bedroom, and I'm thinking I should open a window. It's so stuffy in here all of a sudden. And just my luck that, again, the smell comes back exactly when I start feeling really sick...

And then it hits me--this is no coincidence. Oh my God, I'm not in a stuffy room! And no one else can smell anything. Is it possible that this smell comes from inside of me? Because if that's true, then that must be the smell of cancer. And then I think, I'd better get used to this shit, better learn to like the mothballs, because that's the smell I'm gonna die with.

Getting off Tarceva is not necessarily the beginning of the end. It could be the beginning of a new beginning. Or at least the end of the beginning? I'm not sure I'm making sense here. I'm still optimistic, is what I'm trying to say. I still believe. I believe that even if it doesn't help me live one additional day, optimism is the only way to live, as long as it's mixed with a healthy dose of acceptance. Optimism is what allows me to continue this journey, and what motivates me to go up on as many mountains as possible and to create memories for the kids, for my wife, and for myself, before cancer calls me back down. Plan A is over. Let's see what Plan B has to offer.

November is lung cancer awareness month. Now you know. As part of an effort to raise awareness for lung cancer, I'm including some statistics here:

-- Lung cancer is the biggest killer in the world, and second in the US only to heart disease.
-- Lung cancer accounts for more cancer-related deaths than breast, colorectal (colon), and prostate cancers combined.
-- The 5 year survival rate for lung cancer is 17% (compared to 96%, 88% and 65% for prostate, breast and colorectal cancer, respectively).
-- And despite all that, lung cancer receives only 7% of cancer funding, and 0.1% of charitable donations.
-- Lung cancer affects smokers, past smokers, and people who have never touched a cigarette. If you breathe, you are vulnerable.(Stats stolen from this post).

A donation to one of the many lung cancer organizations (like The Bonnie J. Addario Lung Cancer Foundation or many more you can find online) can help turn this thing around. I believe scientists are close. I believe in science, and I'm optimistic about science. And I'm optimistic about a future where lung cancer is a disease rather than a death sentence.

Tuesday, September 2, 2014

Breathe in, breathe out. Not so difficult, is it? Still around, folks.

Here's a joke. I heard it in a too-hot stand-up tent on the last day of the Phoenix Festival in England, in 1996, and it stuck. I'll paraphrase:

I'm watching the news, and this guy comes up in front of his burning home, and he says to the camera, "You know, I always thought stuff like that only happened to OTHER people!" And I'm looking at this guy, and I can't help thinking, "OK, but you ARE other people!"

That's all. That's the joke. Don't know why it stuck with me, but it's there. It's there every time I look in the mirror, actually.

Because you're not the only ones who read this and feel a comfortable distance. I do too. Even now, I will read a blog post from someone who's going through the same stuff I'm going through, and think to myself, "Man... It's tough, what other people have to go through in this world. What's for dinner?"

Then, at other times, I'm forced to face reality.

Madeline comes home from school. I open her backpack and see two drawings. Looks cool, what is it?

"It's a dying lion. But he feels better because he's resting in bed."

"And what's the other drawing?" I ask, afraid of the answer.

"It's a dying bear. But he's also resting in bed."

OK...

I get very little insight into what she knows and what's going on with her. She's 4, and what should and does appear to concern her are her friends, the kid who pushes other kids in preschool, and what dessert she'll have tonight. But also, apparently, death. And I guess the feeling that as soon as her dad stops resting, he would die.

We told her I was sick. She knows I've been to the hospital a lot. But from there to drawing dying animals... I wish I could grab her right now and make it clear to her that everything would be fine. That with or without me, she would grow up to be an amazing woman. That she has a mother who would always take care of her and always love her, and an older brother who would always be there for her. But how do I say something like that? How do I even hint about the possibility of not being there for her? Not experiencing life with her?

Since starting this post and today, I was at the hospital for 6 days. I had pneumonia, a 104 fever, and the oxygen tubes back in my nostrils, and it turns out breathing in and out wasn't as easy as I thought it would be. Funny, it seems so easy now when I'm back home. In and out, and you live another day. Easy peasy.

I go on the treadmill--doctor's orders. Since my pulse is constantly over 100, even when I sleep, I don't want to push it too much, so basically, I walk for half an hour and watch Netflix. What could be better than that? And it makes me feel normal.

And for a moment, I forget.

We're going to the beach tomorrow. Don't be sick. Don't be sick. Don't be sick. Don't be sick. Don't ruin it for everyone. Make it work. Don't be sick. Please, I don't ask for much, but just give me these 4 days. Four healthy days. Please!

Making it there and being healthy enough to spend time with the kids was the most important thing I could ever do. I didn't get into the water with them, but I was there. I was there at the beach, and I was there at the Ocean City boardwalk, bravely protecting the family from the evil seagulls who'd stop at nothing to get their fries. And I was there to take pictures and to finally shift my attention from myself and from my "condition."

Now I'm back home and I really want to live. Is that silly or what? Funny time to choose to live... I've read the Epictetus quote about death again today, trying to put things into perspective. Feel free to consider "The Giver" whatever you want it to be. It could be nature, or God, or anything you could imagine has put us here.

And dost thou that hast received all from another's hands, repine and blame the Giver, if He takes anything from thee? Why, who art thou, and to what end comest thou here? was it not He that made the Light manifest unto thee, that gave thee fellow-workers, and senses, and the power to reason? And how brought He thee into the world? Was it not as one born to die; as one bound to live out his earthly life in some small tabernacle of flesh; to behold His administration, and for a little while share with Him in the mighty march of this great Festival Procession? Now therefore that thou hast beheld, while it was permitted thee, the Solemn Feast and Assembly, wilt thou not cheerfully depart, when He summons thee forth, with adoration and thanksgiving for what thou hast seen and heard?--"Nay, but I would fain have stayed longer at the Festival."--Ah, so would the mystics fain have the rites prolonged; so perchance would the crowd at the Great Games fain behold more wrestlers still. But the Solemn Assembly is over! Come forth, depart with thanksgiving and modesty--give place to others that must come into being even as thyself.

And it helps. It helps to know people have been thinking about these things 2,000 years ago. I'm not the first one who wants just a little bit more. When breathing in and out becomes almost impossible--just a little bit more. Maybe one more trip to the beach? How about one more car ride? Or even the opportunity to see those faces smile just one more time?

Living like that, with the awareness--the constant awareness--is strange, but maybe the dark cloud hovering above me is not that dark?

See, there's a cloud above me, and no matter what I do what I say where I am and who I'm with, there's a cancer and mortality and an end, and I'm almost constantly aware. By the way, I assume that if I have a cloud of impending mortality, you have one too, since give or take a few years, we're all doomed. But if you're not aware of the cloud, are you at some kind of a disadvantage? Or should I try to re-learn from you to ignore the cloud?

I'm not sure what to think. Life under the cloud is different. Here's a small and silly example: On the one hand, now I know that the whole "One day I'm going to learn French" that's been at the back of my mind is not going to happen. That's it. On the other hand, I don't feel bad about it anymore. For years I've told myself "One day," and when another day came and I didn't improve my French, I felt guilty. But that's done. I speak enough languages. I play enough musical instruments. I know enough DIY. I have zero gardening skills. Very little cooking skills. Constantly feeling like I should be more? Constantly feeling guilt? Hey, that's pre-cloud thinking. Maybe the cloud isn't a morbid distraction from life, but a gift, allowing me to stop treating the day that's passed like it was wasted, and instead, letting me concentrate on all the good that's happened? I saw a butterfly today. It was a good day.

Another meeting at the hospital. Another blood test body scan brain scan. There's a reduction in the number and in the size. I'm doing good. I mean doing well. I'm a little slow, a little weak, a little tired, but 3 months into this thing, I'm not doing too bad. I'm fighting this thing, I'm a fighter. If by fighting you mean getting out of bed in the morning.

I'm not sure what this "fighter" business means, but I guess I know when I stop trying to fight.

I've never liked the idea of getting old. I remember for years, going to visit my grandmother, and her only reply to "How are you," was, "You know... Old age..." And what was her reward for surviving old age? A further deterioration of body and mind. Nearly blind at 99, she still recognized us all. Still remembered our kids, even. But at the same time, she was elsewhere--you could tell she was elsewhere. I remember one time I was sitting with her in the Home, and she suddenly raised her voice and said, "Three kids I put through university! No one can say I didn't do that!" Which was somehow the most personal thing she'd ever said to me. She then quickly moved on to our usual Grandma-Grandson relationship: the "How are you, have a cookie!" talk. And she was one of the good ones, mentally. The other grandmother didn't recognize me when I was visiting, until suddenly she'd remember, say something relevant, and sink back.

So I didn't want to become that, and I have to admit that the possibility of avoiding that became a slightly morbid but nonetheless real silver lining. But what if I get old age symptoms soon? What if I lose my eyesight? Lose my ability to walk? What if I lose my mind? One more brain radiation, I was told this week, and I'd start losing it--just simple stuff, just forgetting things for a start. But it's my brain! It's me! Without it, what's the point?

That's when I stop being a warrior. If I become a young old man, unable to see, walk, and think clearly, I might just wake up, turn the TV on, and wait.

And meanwhile, tests are good. The bad stuff is shrinking. We even have another trip planned, including the zoo at Central Park in New York, apple picking in Vermont... There's still a lot to do and a lot of life to experience with the kids. I love life--I just want to live it on my terms.

Tuesday, June 3, 2014

On Friday, 5/30/14, I found out I had a Stage 4 lung cancer. People in my condition have about a year to live on average, and treatment is now limited to making the next year more bearable. There are other options that may be discussed later, including experimental treatments, and I'm staying optimistic, but frankly, I think I know where I stand.

4 years ago, in the summer of 2010, we were at Bethany Beach, and everyone was having a great time. Our family and some friends were building sand castles, going in and out of the water, and just relaxing in general--everyone except anxious old me. I had hundreds of unread emails and dozens of ideas for blog posts I didn't have time to write, and I was surrounded by too much sand and not enough coffee. I tried to pretend I was having a good time, but people could see I was out of my comfort zone, and worse, that I didn't want to be there.

It was only on the drive back home that I had the epiphany. It was only on the drive back that I realized what I had been missing out on. It was only on the drive back that I realized I had been experiencing the biggest tragedy of human existence: I was having the time of my life, and I didn't even know it.

That was a good day, since once you make that decision, man... You're in Heaven every single second of your life. And it went on and on, and things only got better, because I made a conscious decision one summer day, on the drive home from Bethany Beach, and was able to repeat that decision subconsciously from that moment on. It made the difference between a living Hell, where I was always behind, always unhappy, and always unfulfilled--always a step behind on my writing, my relationship with my wife, with my friends, and with my kids, and a living Heaven, where even if I had wanted more out of life, I also knew I had it all.

I believe in Heaven on Earth, and I believe it's found anywhere you seek it. Here's where I found it:

I found Heaven on long car rides with the kids. I could have felt bad about having to drive my kids back and forth to school for hours every day, but instead, I used those car trips to chat with my kids about their worlds and about mine, to introduce them to music, and to make up music with them, to talk about values as well as about nonsense.

And I found Heaven on the dirty floor of a basketball court. My then 2-year-old daughter used to finish the JCC preschool at 12, so we were stuck for hours, waiting for her brother to finish school before we could head back home. And those days of waiting with my girl will be remembered forever by me and hopefully by her. For 4 hours, we sat around and we shared lunch, and we went to a playroom at the JCC, where she made me plastic sandwiches and tea, and we raced to the basketball court and played basketball, which meant she was leading the parade of two by only stepping on the black line, and I was behind her, dribbling. She made up that game, calling it "Going to the birthday party." Then we would sit down on the floor in front of each other, spread our legs, and roll the ball to each other. Then she wanted to hug, so we hugged on the floor of the basketball court while people played around us.

Even Heaven on Earth includes some caveats. We moved to a new house in March. It's a beautiful house. It's a dream house. It's the house where my kids will grow up, and it breaks my heart. I don't care about myself, I really don't. I've had the most amazing life anyone could ever wish to have, but there's one thing... There's one thing I would give anything for: watching my kids grow up.

I've raised happy kids. Sure, they sometimes whine, but in general, they're happy. They're my masterpiece: two loving, smart, intelligent, funny, happy kids. And I can't let that end. I can't allow them to grow up sad. I can't allow them to grow up with a hole in their hearts in the shape of the dad they barely remember. I want them to be happy. I want to be around to make them happy.

And I want my wife to be happy. She deserves to be happy. I wish I could make her happy right now.

So acceptance, and sadness--well, I believe they can coexist. Sadness is inevitable--I'm only human, and trying too hard to rise above it only hurts more. But I do accept. I accept that life is finite, and I accept that my time will come soon. I accept that my life had been and still is a gift, and I accept the likely possibility that I won't see my kids grow older.

Should I complain, though? Should I cry out to the empty sky and say, "Why me?" Or should I feel that now, even now, especially now, a little confused, a little tired, and a little sad, I'm having the time of my life?

Whatever happens to my body in the next few months is still relatively unknown. Here's what we do know, though:

We know I'm the luckiest sonofabitch who's ever walked this earth, and we know I will be loved until my last moment by people it has been my utmost privilege to know: by a wife I adore and two kids I'm in awe of every single moment.

Just let me make this request of you.

My girl--she's a shy one. You'll see her play by herself sometimes, and you'll be tempted to step back and say, "She plays so nicely by herself!" Go to her. Play with her. She needs you.

My boy--he's so freakin' sensitive. Everything you say will be remembered by him and analyzed for months in that genius head of his. Don't joke with him just to make yourself smile--you'll ruin him. Answer every question he has, or at least direct him to a place with answers. He likes to play and he likes to fool around, but you need to treat him like a grown up. He's smarter than I am, and he's probably smarter than you are.

And my wife--just give her a break. Please, allow her to take a break. She's a type-A personality at work, but at home she's always just wanted to relax and have fun. Help her have fun. She'll want to take all the responsibilities over everything herself--don't let her. Tell her to relax. Tell her to take it easy. Help her enjoy life. And don't label her or limit her in any way. Don't use the W- word with her. She's not that word. She's not an easy simplification. You know who she is? She's the daughter any parent could wish for, and the mother any kid would long to have. Although I've stayed home and took a great share of the credit for raising these amazing kids, nothing could have been done without her. And she'll continue to raise them, and they will continue to grow and be even more amazing teens and adults because of their mother.